Charlotte lives in France together with her parents and her older sister. She was born with a genetic defect and had severe respiratory problems after birth. At the age of four months, she lost weight, so she got a nasogastric tube, followed by the insertion of a PEG button. After being in touch with Valérie of the NoTube team, the family decided to participate in the tube weaning course in Mayenne in 2013. The three-and-a-half-year-old girl made great progress regarding her oral intake and after only a few days in the program, she was able to sustain herself entirely by oral means. Even her PEG button could be removed in Mayenne, a fact that makes little Charlotte proud to this day. Since that time, Charlotte eats completely orally and the PEG button stayed in Mayenne altogether.
From the parents
We were lucky that our youngest daughter (three-and-a-half years old) was declared as suitable for the NoTube tube weaning course 2013 in Mayenne. Since the age of four months, our daughter was fed via a feeding tube and ate nothing orally at all. In Nantes, we met Alexandra and Matthieu from the association „Bébé sans fil“ and they told us about the course. Previously we thought about paticipating in the Graz tube weaning program in Austria, but the organisation of a tube weaning course in Mayenne (France) and an ENT consultation, which showed that our daughter was able to swallow properly, convinced us to take this step. When we arrived at the course, we had a lot of hope but also doubts, just like all the other participants. The volunteers welcomed us warmly, they managed to provide a whole ward of a local hospital and prepared an environment where all children and families felt comfortable. The way the NoTube team worked with us was just outstanding. Of course we also had some difficult moments, but the volunteers and the other parents supported us so well. Our daughter went home without that damn button, pump or tube nutrition. She was very proud to throw the button into the river Mayenne and for us, it felt like a second birth.
Charlotte is now able to eat all by her self, just like her friends at the kindergarten, she even can’t go home from there without eating 2-3 Kinder chocolate bars! Long live Mayenne, the awesome volunteers and the entire NoTube team from Austria!
Julien & Katia